Social Media for Veterans and Health Train Express

The VA has launched social media platforms for 152 VA Medical Centers

Gradually during the past ten years the Veteran’s Administration has taken on a new cadre of wounded and/or disabled Veterans. Today the Army and other branches do  not discharge soldiers until they have been through a vigorous appraisal while still on active duty.  This becomes an important part of their permanent medical record (via the VA AHLTA EMR if they ever have to apply for service  connected disability. At the time of discharge many are not yet aware that they may have PTSD (Post-traumatic Stress Disorder) or post-TBI  (Traumatic Brain Injury).

If you haven’t been to a VA Medical Center lately you would be surprised at the gradual metamorphosis the VA Centers have gone through since 1992 and the first Gulf war.

Many PCPs and other specialty providers may not be familiar with DOD process, nor VA Hospital paradigms for treating military personnel, nor the signs and/or symptoms of PTSD and TBI or how the two can be related to created a synergy that is challenging both to  provider and patient.

 

Introduction to Traumatic Brain Injury <VIDEO>

The Defense and Veteran’s Brain Injury website also offers a centralized information source.

For practitioners not directly affiliated Veteran’s Health Facilities the Department of The Army offers some practical information guides and brochures for both the veteran and his physician.

What is Traumatic Brain Injury ?  During the Iraqi and Afghanistan War the typical head injury changed from massive trauma and hemorrhagic injuries to chronic repetitive concussive (blast) injury from IEDs (Improvised Explosive Devices). In these cases the importance of a history of the injury, the distance from the blast(s) and the number of incidents to which the soldier sustained.

Important  Information For Every Soldier Regarding Traumatic Brain Injury (TBI)

Traumatic Brain Injury (TBI) Program Validation  AMEDD (Army Medical Department) maintains several programs which are linked to TBI and PTSD at Regional Centers. These are staffed with a multi-disciplinary team.

Here are some of the IEDs our troops faced:

Vehicle-Borne IEDs (VBIEDs)

The potential range for harm is impressive and exposes tens and possibly hundreds to injuries or death.

Other devices include:

Suicide Devices

Package Type IED

Many soldiers develop social anxiety disorders as part of the PTSD and post-Traumatic Brain Injury Syndrome.

What role does Social Media play in rehabilitation for these veterans? Would developing relationships on Facebook, twitter, and Google + hangouts benefit these returning soldiers.

There are already a number of advocacy groups for TBI and PTSD active on Facebook, which can easily be found by searching for TBI or PTSD.   For Twitter #tbi and #ptsd already exist.

The Road out of PTSD Hell  from Veterans Today

PTSD and TBI patients do not wear their scars externally. That person sitting opposite of you in the bus, in the restaurant may suffer each day for serving our country.

Technorati Tags: veterans hospitals,google plus,facebook,traumatic brain injury,ied,ptsd,rehabilitation

Will Accountable Care be the Final Straw for US Economy and Healthcare system?

 

     

Few readers do not know about our present economic failures, and the prospect of inventing an unproven model to contain health costs could have the opposite intended effect, further increasing the %age of GDP devoted to US health care

Good afternoon readers. I tried to think of a short, catchy phrase for this subject, but failed miserably

For this post, however you will see with what I came up.

I have been pondering what a 'Project Manager' recruitment ad would read for establishing an Accountable Care Organization. I was about to construct my own plan and came upon this article from eHealthInitiative.

I found out very quickly what is involved.

Essential to the development of an ACO, small or large is Health Information Technology.

Key recommendations include:

• a health IT infrastructure that is flexible to support the changing needs of an accountable care organizational model; (unknown at this time)

• an infrastructure that supports the secure transfer, collection and storage of personal health data;

• a patient-centered system to engage and educate patients and caregivers;

• and a system that supports care coordination across the healthcare team and the patient.

 

"It may be difficult (read impossible) for accountable care organizations to accomplish all of their objectives without a strong technology base that facilitates care coordination and gives doctors the tools they need to provide quality and affordable care," said Jennifer Covich-Bordenick, eHealth Initiative's chief executive officer.

Accountable care is an issue of critical importance to physicians.................. With the right technology in place, these organizations have the potential to improve the health and well-being of their patient populations," said Michael S. Barr, MD, MBA, FACP, Senior Vice President, American College of Physicians.

The report was developed by a multi-stakeholder council which met over an eight month period, and involved the input of over 100 individuals and organizations across the healthcare industry. The council was co-chaired by Michael S. Barr, MD, MBA, FACP, Senior Vice President, American College of Physicians and Marcia Guida James, MS, MBA, CPC of Humana Inc.

The report can be downloaded on the eHealth Initiative Website at www.ehealthinitiative.org.

Of some significance was that 50% of hospitals/groups are not interested in the ACO model.

eHealth Initiative 2011 Accountable Care Organizational Model Survey (ACOM)

The eHealth Initiative launched the Accountable Care Organizational Model Survey on October 7, 2011, and concluded the survey on November 29, 2011.

The survey of 20 regionally diverse groups revealed:

The majority of respondents were unsure or did not intend on applying for the Medicare Shared Savings Program or the CMS Innovation Center Pioneer ACO Model.

50% indicated that they did not intend on applying for the CMS MSSP program.

37.5% were unsure if their organizations intended on applying for the MSSP program.

12.5% stated that they intended on applying for the CMS MSSP program

ACOMS are utilizing a variety of payment models to achieve shared savings. Several organizations reported utilizing or planning to utilize a combination of models:

1. Twelve organizations reported utilizing or planning to utilize a FFS plus a shared savings payment model.

2. Eight organizations reported using an upside potential model.

3. Five models reported utilizing or plan to utilize a downside risk model.

4. Four organizations are utilizing or plan to utilize a bundled payment model.

Two organizations were utilizing a global risk model.

5. One model reported unsure.

I had not realized the ACO has the choice of a number of payment models and cost containment ranging from prepay HMO like contracts all the way to FFS with shared payment and cost containment measures

One of the key ingredients is the component of patient participation in health 2.0 which include:

Telehealth monitors.

Telephonic support.

Mobile technology.

Patient Portal.

Internet-based patient education programs.

Personal Health Comprehensive assessment tools to help providers determine the patient’s level of health literacy so that education can be tailored accordingly.

Online communications such as viewing a summarized patient record, enabling patient input, enrolling in health and wellness programs, linking to health information sites, managing permissions for record access.

I addressed these issues in my last article at HealthTrain Express “ Is The Patient Ready for Physician 2.0 ?

Whether it is a federally or provider-supported model, successful ACOMs will be judged on the basis of their ability to achieve progress in achieving the Triple Aim–improving the individual experience of care, improving the health of populations, and reducing the per- capita costs of care for populations

^{Key Attributes Needed for a Successful Health Information Technology Structure in the Accountable Care Organizational Model}

Health information technology is essential to the success of the Accountable Care Organizational Model. The following list identifies key attributes needed for the development of a successful health IT infrastructure.

The health IT infrastructure must enable care coordination and collaboration.

The health IT infrastructure must enable and support the comprehensive and systematic collection, storage, management, and exchange of secure personal health information between and among healthcare providers, patients and other members of a patient’s healthcare team in the process of care delivery and care management.²¹

The health IT infrastructure must include revenue cycle management technology to successfully support the financial analyses associated with accepting, negotiating, and managing new and changing payment structures. The infrastructure should enable electronic acceptance, tracking and allocation of payments and should be able to handle the distribution of payments to individuals, practices, and other appropriate organizations within the ACOM based on performance associated with specific metrics of quality, cost and patient experience.²²

Data exchanged by the health IT infrastructure should be maintained in a secure, HIPAA-compliant, online environment that allows role-based access to and sharing of data among and between stakeholders (including hospitals, physician practices, healthcare providers and payers).²³

The health IT infrastructure should support the collection of information embedded in the workflow of healthcare delivery.

The health IT infrastructure should support the use of telehealth, remote patient monitoring, shared care plans, and other patient-centered enabling technologies between facilities, healthcare providers, and patients that securely exchange information.²⁴

The information shared through the health IT infrastructure should be collected and stored in a manner that facilitates ongoing measurement of processes and outcomes related to quality, cost, and patient experiences at an individual and population level. The identified

The identified metrics will be important for the assessment of ACOMs.²⁵

The health IT infrastructure should enable information to be transmitted, and accessible to all patients and healthcare providers authorized to view it.

The health IT infrastructure should integrate evidence-based clinical decision support system (CDSS) services into the workflow of care delivered by healthcare providers and their practices.²⁶

The health IT infrastructure should support and facilitate shared decision-making and care plan development through the integration of information from all healthcare providers involved in the care of a patient. There should be convenient access to user-friendly personal health information organized to be meaningful for patients/caregivers and presented in a constant format across the organization.

The health IT infrastructure should support services for patients and caregivers to help them be informed, educated, and literate about personal health and medical conditions and to enable patient self-management of care.

The health IT infrastructure should offer support on-going self-care and wellness management functionalities including, but not limited to, coaching from healthcare providers and ongoing monitoring of progress to promote a dialogue between patients and healthcare providers.²⁷

The health IT infrastructure should support the analysis of clinical, administrative, and financial data to support operations, improve care and better patient outcomes while optimizing the overall performance of the organization.²⁸

To achieve the specific benefits health IT can bring to the ACOM; industry should focus on creating and implementing tools that address the key concepts. This report identifies three key concepts that the health IT infrastructure of the ACOM should support .

ehealthinitiative identified three main components that should be addressed by HIT

1. Patient Safety

2. At Risk Patient Populations

3. Financial Accountability and Quality Management

The report can be downloaded on the eHealth Initiative Website at www.ehealthinitiative.org.

Technorati Tags: accountable care summit,health information technology,cms,medicare,acom,health 2.0,patient safety,risk

Participatory Medicine

 

Hacking Health - Part 1 from J Participatory Medicine on Vimeo.

Participatory medicine  is a  relatively new term coined by patient advocacy groups. It sounds good, so how do we define it?  Does it include knowing your medical history, maintaining a personal health record, being observant of maintaining one’s health with proper exercise, being knowledgeable about good nutrition, compliance with medication instructions, reading your medication side effects and/or contra-indications, knowing and telling your providers about allergies (on every visit), getting recommended vaccinations each year for flu, and pneumovax at the appropriate times?

Have you signed an advanced directive, and is it in your medical chart? When you enter a hospital  do you instruct registration and/or your nurse that you do or do not have an advanced directive? Do you bring all your medication bottles to the hospital? (Yes, even aspirin, Tylenol, decongestants, eye drops and sleeping medications. Do you tell providers about the supplements and vitamins you use, including herbals? Have you travelled recently? Many of our modern day powerful drugs are concentrates or synthetics developed from herbs. Do you practice yoga, meditation, reiki, acupuncture, massage therapy?  Have you travelled recently?

How far can you participate? You cannot hold a retractor or make your own incision for surgery, however you can be certain your nurse or other health care personnel know your name and to be certain that you are not getting someone else's medications or being taken for a procedure intended for someone else. You can tell personnel which side of your body is being operated upon.  Operating rooms now have a standard check-off list including a “time out” in which everyone participates.

There are a great number of items in which you can participate  and many that you cannot.  You can tell your nurse and/or doctor to wash their hands (they often just plain forget in the rush that has become part of medical care.

You can take a shower or bath prior to entering a hospital to reduce the possibility of transmitting an unknown pathogen on your skin, such as drug resistant bacteria like MRSA (methicillin resistant staphylococcus)  And if you are a known carrier of MRSA or someone in your family is a MRSA carrier, certain precautions will be taken by hospital staff (if you tell them)

Hacking Health - Part 2 from J Participatory Medicine on Vimeo.

None of these items create any increase in cost, all likely improve outcomes, decrease “never happen” events and do not increase the paperwork burden on the system.

And best of all it is a bipartisan decision on your part by a Committee of ONE , requiring no political action committees, nor 1200 page Federal Register entries.

Technorati Tags: advocacy,outcomes,obamacare,participatory medicine

Is The Patient Ready for Physician 2.0 ?

Gotta Webcam?

Health IT developers are producing medical applications for mobile users rapidly for both Android and iPhone, and soon for Window Phones.  Most of these are educational or for reference. There are some software applications for remote monitoring which are presently in the FDA approval process.

While pundits proclaim that patients clamor for direct “physician-patient” telemedicine”  Few if any real studies have been done to demonstrate this demand.

Until now there were few if any teleconference software that was affordable for medical practices and patients. In fact a teleconference room and/or facility costs in the range of five figures.  Skype has been available however it presents some limitations in regard to the number of participants unless users are subscribed to the paying service.

Health Train Express will be sponsoring a “Demonstration Project” on Physician-Patient Telemedicine.

I know, I know many will tell me I should not do this due to regulations and all, however progress is made by those willing to risk something in the name of REAL PROGRESS  instead of a bunch of committee meetings. Lett MDs be the arbiters of what works and doesn’t work. Once we demonstrate the need and demand for these services some innovator and entrepreneur will find a way to host medical teleconferences for an acceptable stipend.

The following caveats and disclaimers will be posted for each telemedicine conference to be held on Google + Hangouts.

[This is a “Demonstration Project in  telemedicine. The project will attempt to  determine what the demand is from patients for Primary Care and/or Specialty Care using Telemedicine  Because the Google + Hangouts are not encrypted we will only answer non specific general questions To be in compliance with HIPAA privacy and confidentiality laws DO NOT identify a problem or question with yourself. Please ask your questions in the third person (he, she, we, it)

We appreciate your interest in this telemedicine demonstration project. At the end of thirty (30) days the results will be published here in Health Train Express. The announcement will be posted on Twitter @glevin1  Facebook/gmlevin and Google +.

“During the Google + Telemedicine Hangout you will be asked if you agree to having your interview recorded.  If you decline it will not be recorded.  The recordings will be available to a closed panel of physicians and well known patient advocate and will not be released to the general public.  The review committee will comply with HIPAA regulations to protect your identity.  Your waiver of HIPAA regulations will only apply to the G+ interview.

AGAIN, DO NOT IDENTIFY YOURSELF IN THE INTERVIEW ]

Health Bloggers, #hcsm, #healthit #mapp # healthreform and #telemedicine readers, if you wish to join a telemedicine hangout contact me via email  at  gmlevinmd@gmail.com. You will receive an invite for each conference.

I invite other physicians to join as part of this ‘ground breaking use of affordable and existing platforms. The platform will allow multiple consultations for an individual or group of patients.

Google has “mothballed” the Google Health personal health record for the time being. The statistical results of the study will be shared with Google in the interest of a professional encrypted platform in the future. 

Providers, I hope to see  many of you in this hangout.   Please use twitter, FB, and/or email to communicate with other physicians and providers regarding the demonstration project.

ACOs Are They a Social Media Experiment?

An email caught my attention this morning about the above flashing banner. It was published in “Accountable Care News”.  How Can Nurses Be Best Utilized in ACOs? by Mary Jean Schumann, DNP, MBA, RN, CPNP.

This question and many more like it are featured in this edition, including Positioning Specialty Services for Accountable Care by Philip Ronning

Volume 2, Issue 12 of Accountable Care News discusses key changes already proposed for the ACO rulings

THE ACO MEDICARE SHARED
SAVINGS PROGRAM FINAL RULE
Analysis of Key Changes from the
Proposed Rule
By Epstein Becker & Green, PC

The discussions are led by such luminaries as:

Molly Joel Coye, MD, MPH
Chief Innovation Officer, UCLA Health System
University of California, Los Angeles
Los Angeles, CA

Bruce Merlin Fried, Esq.
Partner, Health Care Group
SNR Denton US LLP
Washington, DC

Paul B. Ginsburg, PhD
President
Center for Studying Health System Change
Washington, DC

Janet M. Marchibroda
Chair, Health Information Technology Initiative, Bipartisan Policy Center
Executive Director, Doctors Helping Doctors Transform Health Care
Washington, DC

Paul Katz
CEO
Intelligent Healthcare
Santa Monica, CA

The Program encourages the formation and operation of ACOs by promising
to share Medicare’s savings from the program with those ACOs that:  (1) meet
eligibility requirements; and (2) meet the quality performance and Medicare cost
savings targets described in the Final Rule. 

The most significant changes in the final ACO regulations are around the measures for establishing quality performa scoring.  The final regulations move from 65 proposed measures to 33 final measures.  They also limit the requirement
around advanced care coordination across the patient’s care continuum.  Initially, this was a major concern of many organizations since creating an advanced integrated technical infrastructure was very expensive, and in some cases cost
prohibitive to organizations.

 
The experts argue the final regulations appear to create a nice balance between driving care coordination around patient quality outcomes to
reduce costs, and not overburdening organizations with significant new infrastructure investments.

The Devil is in the details, you can read it if you have the stamina to read all 189 pages of governmental control and loss of  marketplace freedoms.

If and when Obama Care is repealed the ACO Mandate should be included.

A wave of anti-ACO sentiment has been expressed by many hospitals and practice entities.  The already integrated health systems such as Mayo Clinic, Cleveland Clinic, Kaiser Permanente and others seem to be already eligible but for meeting criteria for savings.  The changes herein seem an attempt to assuage the anger and hostility of independent hospitals and medical groups toward HHS and more federal control.

All of this ‘organizational activity’ stimulates more social interaction and will drive discussions on social media sites such as Twitter, Facebook, and now, even Google plus.  Discussions will arise on Google Hangouts.

                    

 

There are now several “Permanent Hangouts” indexed on Google plus. Click on “Permanent Hangouts” to see the directory, and add your own topic. The list can be found on Google plus using the G+extension.

Technorati Tags: ACO,social media,Google plus,Google Hangout,accountable care summit,cms,hhs,physician

Update on Health Information Exchange

 

Health Information Exchanges are the offspring of the failures of numerous RHIOs due to unsustainable business models. They are the same horse of a different color.

HIEs were empowered by the sequence of events beginning with George Bush appointing David Brailer MD to develop ONCHIT by executive order. It was then approved by Congress and funded as a regular agency. The passage of HITECH and ARRA (stimulus program) incentivized electronic medical records and Health Information Exchanges.

The February 1, 2012 meeting of the Health IT Policy Committee was provided with an update of the current status of the State HIE Program, as well as an update on the standards work and development of the NwHIN and Direct Project. This is a fascinating review and if you are interested in health information exchange, you should take the time to watch this. I believe it offers some hints towards the upcoming rule on NwHIN governance and the health information exchange requirements for Stage 2 meaningful use. Below is the presentation to the committee by Claudia Williams, ONC’s state HIE program director, and Dr. Doug Fridsma, director of ONC’s Office of Standards and Interoperability.

Slide share Presentation

Despite more than 8 years since the concept of RHIOs began and significant financial incentives as well as penalties for non compliance the adoption of HIE has been slow. HIEs develop slowly often because of financial uncertainty, lack of sustainable business models, and other factors.

These other factors include the realization by hospitals and providers that this added feature will increase cost and at the same time thus far has not demonstrated any return on the investment.  Perhaps this will change with time and the burden of paperwork, faxes and time required to obtain medical records decreases.

However, the record is not good. Measures of ROI thus far do not demonstrate decrease in costs. As the network increases there will be hardware maintenance, software developments and upgrade expense to add to the cost escalator.

CMS and HHS have funded EMR and HIE incentives with the agenda to recapture the taxpayer’s dime extracting information such as outcomes and treatment protocols in real life hoping it will decrease cost in the long run.  A large and risky bet, however it’s your money….However your practice, doctor is not too big to fail.

Technorati Tags: cms,hhs,emr,rhio,onchit

It’s In Your DNA: Social Media

 

Take a look at the Info graphic below…. This is taking place in a single minute — every minute — of most everyday within the digital world….  

Still think it’s a passing fad?

Still think you do not need to establish some form of digital presence on the healthcare social media stage? 

—Think again —

http://goo.gl/Bwz1d By: Shanghai Web Designers

Howard J Luks M.D. points out the reasons why physicians should participate in the landscape of social media in his recent post via Summify.

Dr Luks message and articulation of the message is so well put that I repeat it here, and give him full credit for this information. It bears repeating in my blog(s).

I happen to agree with him. Issues surrounding health care and health reform have become much more public, open and transparent. Physicians must use the medium which is presently gaining momentum to replace printed and rapidly becoming obsolete magazines, newspapers and other forms of advertisement.

Let’s face it most studies and experience show the decline of ‘established newspapers, and journals. This is even more apparent in the under age 50 demographic.

Dr. Luks points out:

• 50% of the world’s population is under 30. 
• They do not communicate via e-mail or telephone. 
• Generation Y and generation Z consider e-mail passé. 
• The fastest growing segment on Facebook is women over 55 years of age.  
• SMS, direct messaging, micro-blogging and digital media is fast becoming the chosen communication standard.
• Drug/Medical related “Likes” on Facebook have skyrocketed.

Dr Luks goes on to elaborate:

50% of the mobile Internet traffic in most countries is for Facebook. One on five patients flock to Facebook for healthcare information.  Imagine what this means for a bad patient experience?  The world has gone digital —social media is here to stay.  1 billion people simply cannot be wrong. 85% of people log onto their Facebook account every single day.

Any news media presently in business  already has built or is building a social media presence. Twitter, Facebook and Google + seem to be in the lead of popularity and each has it’s own model which changes almost daily in an effort to capture the most users.

Recently I have been in several hangouts on Google + where people have asked for my medical opinion in the hangout. Each of them has expressed their willingness to “waive their privacy rights'” under current HIPAA laws.

Physicians are entrenched in patient privacy and confidentiality by their own training and ethics long before HIPAA was passed. Despite this restriction, many patients already waive privacy when they allow their story to be told  at grand rounds in presentations, for testimonials regarding treatments, in other media and for other purposes.   Does this carry forward for social media?

I would like to ask the readership their opinions and experience in this matter? How many of you have been asked this same question, and what have you advised? Would a verbal waiver be adequate or would you require it to be in writing? 

.

What most physicians recognize is that access to a physician (and almost any physician) is restricted by time and distance. Patient abhor our new systems of telephone trees and triage.  Numerous times potential patients express their desire to interact on social media or email with their physician even preferring to leave a ‘message’ via email, twitter or Google plus.

With the enormous increase in ‘Boomers’ our system is about to be stressed beyond it’s limits unless some creative steps are taken by universal acclaim. We cannot wait for governments to solve problems that physicians and patients are able to address together. The perfect storm of limiting reimbursements, and increasing benefits, and access threaten our health system.  The first step has already taken place by eliminating pre-existing conditions, and extending eligibility of children under the age of 25 under their parent’s policies.

Physicians should start thinking about setting aside fifteen to thirty minutes a day to devote to patient care via social media. Some are already doing this via secure email or built in secure messaging in their electronic medical record systems. However not all EMRs are created equal and most do not afford this feature.

Most patients no longer find a physician through the yellow pages..they search on Google. Google also indexes social media, and blogs. Their entrance to your practice (other than an insurance roster) is already via a search engine, be it BING, YAHOO, or GOOGLE, Twitter and Facebook. Patients can even invite you to a Google Plus Hangout. And these can be one on one.

Internet social media is only beginning and will be adapted in ways we cannot yet even imagine. It has already become a commonplace feature of broadcast television, anchor news, and international links between non major news sources for direct news bypassing conventional syndicated news sources such as CNN, FOX, ABC and NBC.  It may become a primary source for professional journal news releases.

The American Medical Association has published a statement regarding physicians’ use of Social Media

Stay tuned…different place, different station and at any time.

del.icio.us Tags: news,socialmedia,googleplus,twitter,facebook,internet,summify

Are Physicians Becoming Extinct as Solo Practitioners?

 

While watching the  Presidential debates and listening to economists seeking the mysteries of how not to spend more than we ‘make’, it became to me that the health care industry suffers from the same malady that our economy faces.

Technology has accelerated and has outstripped our economic structure to adapt and transform. The same is true for health care. Much of it filters down to physician offices, medical staff structure, pharma, and hospitals.

Rapid obsolesence is least often recognized initially by the species that is about to disappear until it is moribund.  Early adjustments fail to correct the stresses, and finally it crumbles.  In the process the species dwindles and it’s population declines. Such seems to be the fate of primary care and solo practitioners. Studies of physicians who practice as solo practitioners reveal a dramatic shift to group pracice and to being employed by a group practice or hospital  as opposed to being employers. What and when wil the “extinction event” occur?

American physicians are hell bent to maintain autonomy and some semblance of rule and control of their workspace.  Opinions on this are wrought with emotion. So we as physicians are at the point of “I am mad as hell, and I am not going to take it anymore”. In many ways this self-serving emotion flies in the face of mounting evidence that it takes a ‘team” to treat illness and even more so with serious illness.

Much of our economy derives success on productivity. In medicine we have formerly measured productivity with volume of patients seen and/or income.

We now see productivity in health care beginning to be measured with outcome studies,, the rate of readmission to the hospital, the incidence of acute heart disease,declines in morbidity, life span, and reduction of costs, and improved efficiency delivering health care. Much of this involves wellness and modifying factors that decrease immunity, decreasing stress, avoidance of improper nutrition and encouraging physical fitness..

We need to start on all of this early in life…in early childhood.

Fast Track for Health Train Express

 

The Food and Drug Administration today approved a new drug for the treatment of Cystic Fibrosis three months earlier than expected..

This comes as exciting news for families with anyone with this dreaded illness.

Cystic fibrosis is a disease caused by a gene mutation which causes a defect in chloride transport across the cell membrane in pulmonary and pancreatic cells. It causes severe malnutrition as well as pulmonary insufficiency leading to markedly premature death. Without treatment the average survival rate is 8-13 years.

This blinded placebo study of 213 patients revealed a marked improvement in lung function and reduction of disabling symptoms

The first version of this treatment was released for immediate use. It is meant for persons with the G551D CFTR mutation. Prior  cystic fibrosis treatments included drugs that alter effects of the defective CFTR protein which produce thin mucous, antibiotics to fight infection as well as enzyme replacement  for severe pancreatic enzyme deficiencies.

                 

The drug known as Kalydeco and developed by Vertex Pharmaceuticals, counters the effect of one specific mutation in the gene that accounts for 4 percent — or about 1,200 — cystic fibrosis cases in the United States.The drug is approved for patients age 6 and older with the G551D mutation.

Although Kalydeco treats a very small subset of CF patients,The Cystic Fibrosis Foundation said there is an ongoing phase 2 trial for people with the more common CFTR gene mutation, using Kalydeco alongside a second experimental drug, VX-809. Findings from the first part of this trial have been encouraging, with the second part still underway.

Kalydeco, known generically as ivacaftor and during its development as VX-770, will cost $294,000 a year, a price roughly in line with those of some other drugs for extremely rare diseases. Vertex said it would have various programs to help patients pay for the drugs or obtain them free.

About 30,000 Americans have cystic fibrosis, which is caused by mutations in a gene called CFTR that is responsible for transport of chloride ions across cell membranes. People with the disease tend to have thick mucus in the lungs, which leads to infections and lung damage. Their average life span is 37 years.

Venture philanthropy played a large role in the drug study.  The Cystic Fibrosis Foundation invested  $75 million dollars from it’s charitable treasuries into Vertex Pharmaceuticals after assessing early animal studies which predicted  the potential for the new drug. The CF foundation raises about $ 40 million dollars each year with it’s annual “Great Strides for Cystic Fibrosis” and the “65 Roses’  fundraisers each year. The events are held annually in many cities by the local chapters of the CFF.

The gene controlling CFTR was discovered 25 years ago, and it has taken that long for translational research to produce a successful treatment.  This treatment is not a genetic treatment (which was attempted, and failed) but a direct repair/replacement for the defective chloride transferring protein in cell membranes.

The story of how the term “65 Roses” came about is one unto itself,

Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.

Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

65 Roses^® is a registered trademark of the Cystic Fibrosis Foundation.

In 1969 when I was a pediatric intern at Henry Ford Hospital I cared for three children ages 7-10 years old with severe pulmonary insufficiency and malnutrition. None weighed more than 60 pounds. None lived another six months.

Fast forward 20 years.

In 1991 we were served  with the diagnosis of cystic fibrosis in my second son. I promptly passed out. 

He is now age 23, the beneficiary of early effective treatment  (starting in 1994) with Pulmozyme (DNAse which thinned his thickened pulmonary mucus, inhaled Tobramycin to suppress Pseudomonas and to treat MRSA. The CF gene was identified early in his life. He has been in several FDA clinical trials for new drugs that will soon be released.

The financial challenge to families with this disease is enormous. His monthly prophylactic treatments average $3500-5000/ month.(when he is well) About every 12-18 months he receives a three week course of two or three antibiotics at home via a percutaneous intravenous line. The treatment is started at the CF center and then continues as an outpatient at home.

reddit Tags: cystic fibrosis, kalydeco, fda, pulmonary insufficiency, malabsorption, failure to thrive

Heart Attack on The Health Train Express

HOW TO SURVIVE A HEART ATTACK WHEN ALONE

source: Google + Stream

Disclaimer ! Health Train Express nor it's author endorses this method of self CPR. The user must judge for themself whether to do this or not... The user accepts full responsibility, regardless of the outcomes. Note: Medicare does not allow for reimbursement...do not bill Medicare.

Let's say it's 6.15pm and you're going home (alone of course),
after an unusually hard day on the job. You're really tired, upset and frustrated. Suddenly you start experiencing severe pain in your chest that starts to drag out into your arm and up into your jaw. You are only about five miles from the hospital nearest your home. Unfortunately you don't know if you'll be able to make it that far. You have been trained in CPR, but the guy that taught the course did not tell you how to perform it on yourself..!!
KNOW HOW TO SURVIVE A HEART ATTACK WHEN ALONE..
Since many people are alone when they suffer a heart attack, without help, the person whose heart is beating improperly and who begins to feel faint, has only about 10 seconds left before losing consciousness.
However, these victims can help themselves by coughing repeatedly and very vigorously.
A deep breath should be taken before each cough, and the cough must be deep and prolonged, as when producing sputum from deep inside the chest.
A breath and a cough must be repeated about every two seconds without let-up until help arrives, or until the heart is felt to be beating normally again.
Deep breaths get oxygen into the lungs and coughing movements squeeze the heart and keep the blood circulating.
The squeezing pressure on the heart also helps it regain normal rhythm. In this way, heart attack victims can get to a hospital.
Rather than sharing jokes please.. contribute by Sharing this which can save a person's life!!!!

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A better idea: Use LIFE ALERT

Obama Whitehouse Hangout…what does it have to do with Health Care….NOT

 

I happened to sit in on the Google + Hangout on the Live Stream. There were only five active participants allowed. The questions were drawn from a pool of pre-submitted YouTube videos sent to the Whitehouse. Initially the guidelines were the most popular questions or watched videos watched by YouTube Videos would be addressed.  However at the last minute the guidelines were changed to the White House Selected questions.

The questions were from the usual list of candidate debate issues. It was a well manicured session from ‘the groupies’ with all smileys and nods,and thank you Mr. President.One of the questioners grilled Mr. Obama about the lack of employment opportunities for engineers, one sector of the economy that is supposedly was recovering quickly  Mr. Obama went so far as to ask one of the participant spouse’s to send his professional resume to him to assist his job search in engineering.

Some topics avoided:  SOPA, OWS, Education Costs

There was no discussion about healthcare and/or Obama care.

Mr. Obama and his managers obviously think healthcare is off the radar.

Even if healthcare was on the radar the committee of inquisition would not have known the right questions.

 

1. Will there be an ACO in my neighborhood? (Will I even have a doctor?)

2. Why doesn’t my doctor look at me during my visit instead of his computer?

3. Why did Google hibernate it’s Google Health personal health record?

4. Why (an what is) a Medicare Demonstration Program ?  Why haven’t the results been widely published from the Congressional Budget Office regarding their failure to control costs.?

5.Can HIPAA be waived voluntarily by patient and provider for the use of social media to improve efficiency and drive down the number of office visits and expense?

I summed it up like this when I was asked how it went. My response,  “I decided at half time to go out to get soda, popcorn, and a hot dog, then decided not to go back. The second half was like the first. no last minute touch down runs….interceptions, or fumbles.   At least the hot dogs were ballpark fresh !

reddit Tags: White house hangout, obama hangout, obamacare, medicare reform, demonstration project

Pilot Programs—A Waste of Tax Dollars

Vindicated ! I have always been of the opinion that ‘pilot studies’ are a good waste of the taxpayers money. HHS and CMS seem addicted to these studies. It is almost like sending a program ‘out to bid’. John Goodman just seconded my motion of three years ago, and I do not belong to any Foundation ‘study groups’. I thank John Goodman for doing the hard hands on work to prove my hypothesis. The CMS Demonstration Projects are a good example of pilot programs

Most of these pilot programs are modeled after other ‘exceptional program’ already in progress. The selection criteria is the cost of Medicare services in specific regions of the country and an attempt to duplicate practices in each of these regions. Keep in mind this is a report from the CBO (Congressional budget office) which is only one measure of success or failure of a project. Nothing is said about quality of outcomes, return on investment of new paradigms of bundled payment, readmission to hospitals, morbidity or mortality reports.  It is a report from an agency totally separate from HHS or     CMS.

Successful innovations are produced by entrepreneurs, challenging conventional thinking — not by bureaucrats trying to implement conventional thinking.

On the supply side, we have the islands of excellence (Mayo, Intermountain Healthcare, Cleveland Clinic, etc.). On the demand side, we have a whole slew of experiments with pay-for-performance and other pilot programs designed to see whether demand-side reforms can provoke supply-side behavioral improvements. And never the twain shall meet

Can you think of any other market where the buyers of a product are trying to tell the sellers how to efficiently produce it?

Well put John Goodman. You have articulated well my meager general common sense approach and decades long observations of clinical practice.

Once again, ‘boots on the ground’ can quickly size up a problem.

Read John Goodman’s article on the Health Care Blog

digg Tags: cms, demonstration project, pilot program, outcome study, health train express, health care blog

Health 2.0 India

Health 2.0 India Conference #health2india
This meeting should be extraordinary given that so much software development originates in Asia.
I invite the attendees to tweet using the  hashtag given by Matt Holt  #health2india.
I am providing information about Google Plus Hangouts. The invitation will be in my Google + stream   +Gary Levin  Instructions for joining and using Google + and hangouts are readily available via Google + and searching. I will also send invites to anyone who wants to receive a direct link, Just send me your email.
Here’s the link to look at G+ and see if you want to prepare early.
Join Google +
The Hangout will open in 6 hours (Sunday) (6 PM PST)  Monday 7AM (Delhi) It will be operational from 7AM to 7PM Delhi time.
Other participants can open their own hangout, however hangouts cannot be initiated on smartphones or tablets unless you are on Wi-Fi.